First 500 IBHO BioResource volunteers recruited and first Sickle Cell study application received

The IBHO BioResource is a joint initiative between the NIHR BioResource, King’s College London and Genomics England that launched earlier this year. Individuals from Black ethnic backgrounds in England are invited to provide a blood sample and health and lifestyle information which can be used to support research into key health conditions. A crucial aspect of the IBHO BioResource is its collection of both genetic and environmental information, which in combination may put pieces of the puzzle together in our understanding of health inequalities, all while focusing on communities in society who have been historically underserved.  

Through the partnership with Genomics England and their Diverse Data initiative, there is an early focus on inviting children and adults living with Sickle Cell to join the IBHO BioResource. Approximately half of those to join have a diagnosis of the condition.

The IBHO BioResource operates a growing number of recruitment sites based in clinics and research settings at NHS Trusts across England. A huge thank you to our colleagues across the country who have worked hard to open for recruitment and help us reach 500, notably the teams at University College London Hospital (UCLH) and Leeds Teaching Hospitals for onboarding more than 100 volunteers each. To date, we have 23 active sites across England, with new sites joining each month. 

If you would like to take part, you can check the current list of available sites in our short online form and register your interest. If you are a Sickle Cell patient, then please contact us or speak to your clinician about taking part to see whether your clinic is currently participating in the IBHO BioResource. 

First research study application

Following news of the IBHO BioResource earlier this summer, researchers are becoming aware of the potential of this dedicated resource to deliver research that supports the specific needs of UK Black communities. We have received an application to work with IBHO BioResource volunteer participants from a team researching Sickle Cell and hope to be able to share more details of this and many other studies soon.

With this potential first partnership and the growing pool of volunteers, the IBHO BioResource is poised to make significant strides in advancing targeted research efforts, improving care, and ultimately improving Black health outcomes. 

IBHO BioResource in the community 

A central theme of establishing the IBHO BioResource is having community voice rooted throughout, from design to delivery. Our sites and research teams work hard to get out and speak to people in local communities, to hear from them directly and to provide the opportunity to ask questions and register their interest in taking part.  

One example is the team (pictured above) at Moorfields Eye Hospital NHS Trust and the NIHR Moorfields Biomedical Research Centre (BRC) in London, who have attended several community outreach events in November, including a community health event hosted by Lambeth Council, Africa Advocacy Foundation (AAF), and the Caribbean & African Health Network (CAHN) and several local worship spaces in South and East London. BRC Genomics Research Manager Samantha Malka has given talks at some of these events about the importance of research participation in underserved communities to improving health outcomes and attended alongside N. Boachie, Juliana Palma, Roxanne Crosby-Nwaobi, Berivan Celik, Lauren Crawford and Aisha Alagbala. At each event, they have had an exhibition table to talk to people about the IBHO BioResource and how to join, with 56 volunteers enrolling across the various events.

The Primose Files: Sickle Cell Warriors

Genomics England supported the Bristol African Caribbean Expo (BACE) to create the ‘Sickle Cell Warriors’ documentary, aimed at raising awareness and increasing understanding of sickle cell, as we recognise the critical importance of genomic research into this condition. Part 1 available below and part 2 also on YouTube.